Over this past year, I have been immersed in the world of appointments, assessments, and therapy sessions. I’ve learned more acronyms than I ever did at university. And I’ve met more therapists, doctors and specialists than I can keep straight.
This month marks one year that we’ve been temporary parents to a little one who has special needs, and wow, has it been an education! I’ve lost count of how many appointments we’ve had over the past 12 months. And those were just the medical appointments. We also have therapy sessions twice a week.
I’ve only been doing this for a year, but I know many moms and dads who live this crazy schedule year in and year out. This is their status quo, and I don’t know how they do it. I’ve been overwhelmed, stressed and scattered many times. I’ve had to rely on my phone’s calendar app to tell me when to leave for appointments, and I’ve forgotten things more than once.
Over these 12 months, I’ve learned so much, and I’ve gained a greater perspective on a world I may not have been a part of otherwise.
Here is what I’ve learned:
1. There is a huge community of therapists, doctors and specialists that are invested in seeing your child do well. They’ve seen the progress your child has made and they know just how much work went into reaching each milestone. At the same time though, they don’t get to see the child day in and day out. The ones who spend the most time with your child are the ones who will see the most in terms of progress.
2. People can be rude. Yes, I know my little one has physical differences, but that doesn’t mean you should point it out. Would it be okay if I pointed out your daughter’s crooked nose? Not so much, right? Same rule applies ;-).
3. The range of what we call “special needs” is amazingly diverse. Never see a diagnosis as a prognosis. Kids are adaptive and can stretch themselves beyond our expectations!
4. Children are among the most inclusive people I’ve come across. They make no assumptions about limitations, and they push each other to reach new goals. They could teach the rest of us a thing or two!
5. The phrase “special needs” doesn’t always mean what you think it means. It could mean anything from physical limitations, to behavioural concerns, to psychological issues, to mental illness, to any number of other things.
6. It takes a conscious effort to make sure your other children don’t get lost in the shuffle. Driving hundreds of kilometers each month, the amount of time appointments consume, and the extra care that a special needs child may require means there isn’t always that many hours left in the day to spend with your other children. Making a deliberate effort to connect with each child every day is so important.
7. Help from friends is so appreciated and often a life saver. We’ve had friends work around our crazy schedule, babysit our kids, invite us over for dinner, entertain the little one at functions, and distract him at church. This gives us a chance to regroup or take care of other responsibilities, and that is a huge blessing!
Are you a special needs parent?
What do you wish others knew or were more aware of?